Thought for the Day

Wednesday, November 17, 2010

I went to see my endocrinologist last week, and we looked at some unfortunate patterns in my blood sugars. I explained that my basal rates were almost certainly too low since my activity has decreased so much from where it has been in the past. She agreed, and made some suggestions about adjusting the basals upward incrementally. There might be no need to go through basal testing while fasting if I already know I need to increase the basal rates. Later I could fine tune it if necessary.
So I was listening to this and nodding my head, but meanwhile, inside, I'm thinking, "NO! It's not my basal rate that's wrong! It's my body! I need to get more exercise, not compensate for not exercising!"
So it's been a week, and my basal rates are still too low, as I knew they were before I even went to see the endo, but I'm reluctant to make the change. It's like conceding that I'm lazy.
Maybe a century ride down in Tucson on Saturday will kickstart me out of this funk. Maybe.

Wednesday, November 10, 2010

My insulin pump, a Medtronic Paradigm 522, is out of warranty, so my insurance will cover a new one. Medtronic would like me to upgrade to a Revel, but I don't think I will.
Everyone has their own wants and needs, and Medtronic may be the best brand for a lot of people. I just don't think it's right for me at this time. I've heard their sales pitches and looked at the features online. Even as Medtronic explains it, I don't feel great about choosing Medtronic.

o Insulin Pump With Built-In CGMI don't care. I've used the CGM, and I'm unimpressed. I wrote about it here before, saying how I both loved and hated it. From what I've heard, the other CGM option available is much more user-friendly, even though it is not integrated with a pump. The bottom line is that a CGM that is seldom used is not much better than no CGM at all.

o Always Tracks Active InsulinThis feature matters, but Medtronic is only marginally better than Animas, which loses track of active insulin during a battery change, once every few weeks. Omnipod is stupid in its handling of active insulin, so it's not much to beat them.

o Simple Bolus CalculationI don't know why Medtronic considers this a feature of their pump. Medtronic is just like everyone else, except for not having a food database. They are critical of the difficulties in using the food databases in the other pumps, but that ignores the fact that with Medtronic you still need to get the carb count, maybe reading a label or something, and punch it in.

o Pediatric Friendly FeaturesNot being a child, I don't care, obviously. And it's annoying to have to say that I don't care, but I do every time I talk to a Medtronic rep.

o Specialized Type II FeaturesAs a type 1 diabetic, I don't care, obviously. And it's annoying to have to say that I don't care, but I do every time I talk to a Medtronic rep.

o Easy Task CompletionThe interface is not that good that Medtronic should think it's worth bragging about. Where do they find designers and user interface experts?

o Active LifestyleSwimming, sweating, bike riding in the rain. All of these things are facilitated by waterproofing. Medtronic actually calls out "The pump can be detached" as a way you can adapt your pump therapy to your active lifestyle. That's so stupid it's insulting.

o Convenient Software with Clinical Evidence
CareLink sucks. Really, where do they get human interface experts? It's convenient in the same sense that the forms for filing your income tax return with the IRS are convenient. Thanks tons, Medtronic.

o Diabetes Support TeamMedtronic does seem to lead on this, but I only use their support a couple of times a year. So I don't rate this as a high priority for me.

o Partner for LifeAll pump companies would like to be my partner for life. It is profitable.
Some companies have dropped out of the pump business. So right now, Medtronic is the oldest company in the insulin pump business. Is PanAm the best airline, or do you prefer to fly TWA?
This is not a selling point for me.

New Basal Features in the Paradigm Revel™:
· The smallest basal increment (0.025 U/hr)
· Basal Delivery Pulse based on basal rate volume:
- Delivers in pulses of 0.025 for basal rates from 0.025 to 1 unit per hour
- Delivers in pulses of 0.05 for basal rates from 1 unit per hour to 9.95 units per hour
- Delivers in pulses of 0.10 for basal rates of 10 units per hour or more

I don't care about any of these.

New Bolus Features in the Paradigm Revel™:
· Missed Bolus Reminders
- Set up to 4 per day by time period (i.e.: 11:00 AM – 12:45 PM for lunch missed bolus reminder)

I don't care. Forget to bolus? Happens about once every five years for me. This feature would just be reminding me to bolus when I didn't bolus because I didn't need to.

· The smallest bolus increment (0.025 units) of any pump
· Widest Carbohydrate Ratios available from 1:1gram to 1:200grams
· Adjustable Bolus Scroll Rate feature allows for the most precise bolus dosing: - Default setting is 0.1 units
- When the scroll rate is set to 0.025 units, boluses smaller than 1 unit are calculated to the nearest 0.025 unit
- When the scroll rate is set to 0.025 or 0.05 units, boluses between 1 to 10 units are calculated to the nearest 0.05 unit
- All boluses greater than 10 units are calculated to the nearest 0.1 units
· Variable Bolus Delivery Speed (regardless of scroll rate selected)
- Boluses in the range of 0.025 to 0.975 units are delivered in 0.025 pulses delivered at a very gentle rate of 1 unit in 1 minute 16 seconds.
- Boluses from 0.975 to 9.975 are delivered in 0.05 unit pulses and delivered at a rate of 1.5 units per minute.
- Boluses of 10 units and larger are delivered in pulses of 0.10 and are delivered in 5 minutes. Even a 25 unit bolus is delivered in 5 minutes.

I don't care about any of these.

· Active Insulin is displayed on the "Estimate Detail," "Status" and the "Bolus + Delivery" screens
- Active insulin will be displayed even if the Bolus Wizard is not used

Neat. However, it's not a big deal to have it finally work the way it always should have. And like a lot of these improvements, this seems like a software/firmware upgrade which must have been fairly easy to do.

· High and Low glucose alerts will sound on the Revel™ from a RF meter reading

I don't care. If I check my blood sugar with the meter, I know if I'm high or low from the meter.

· Capture Option
- Allows users to electronically save certain types of information, including BG measurements, amount of insulin used, carbohydrates eaten, exercise and other information that is useful in diabetes management with the CareLink
Nice. However, this saves only a little bit of information. You can fill in more later in CareLink. This is getting better, but still feels like 20th century, rather 21st century technology.

New CGM Features in the Paradigm Revel™:
So far, I have found the CGM almost unusable. All of my comments should be seen in this light. A feature might sound good on its own, but the drawbacks of the whole system probably render it irrelevant to me.

· Predictive Alerts
- Can alert user of a hypo or hyper event 5-30 minutes prior to threshold being hit
- An internal study published this year showed that when Predictive Alerts are used, the hypo detection rate increased by 36% compared to using a low glucose alert alone
Nice.

· Rate of Change Alerts
- Alerts patients to rapid changes in glucose regardless of where the Sensor Glucose is. Rate of change alerts can be set for fall or rise rates from 1.1 mg/dl/min to 5.0 mg/dl/min
Imagine, my blood sugar is 40 but rising quickly, so I get a rate of change alarm. My blood sugar is 350 but falling rapidly, so I get a rate of change alarm. I should not get these alarms.
The only reason I can imagine to provide these alerts in addition to predictive alerts is if the sensor may be totally inaccurate.

· Customizable alert thresholds
- Up to 8 different time buckets can be programmed with individualized high and low thresholds

Nice.

· Historical Sensor Glucose Graphs are displayed for the previous 3, 6, 12 and 24 hours
· Glucose Sensor graph timeouts can be set to 2, 4, 6 minutes or none. If NONE is selected the graph will not time out unless and alert/alarm occurs· Area-Under-the-Curve ( AUC ) metric - New measure of glucose exposure under and over preset glucose threshold

These features are nice, but not a big deal.

· CGM demo option for training purposes

This is totally irrelevant to anyone but a Medtronic sales rep.

· All alerts can be silenced for a set period of time up to 24 hours
I hope they didn't spend any time working on this feature that they could have used doing something useful.

Other important information:

· USB included with all pump purchases not just CGM orders
Neat. However, it's not a big deal to have it finally work the way it always should have.

· Alert Directed Navigation
- When an alert goes off the Revel™ goes directly to the screen to resolve alert, dramatically minimizing button pushing
Neat. However, it's not a big deal to have it finally work the way it always should have.

· Simplified menus and language used (Manual Prime changed to Fill Tubing)
Wow! I mean, wow they really think this is worth mentioning? It only calls attention to the fact that they didn't do it right the first time.

· Auto Calibration has been improved
- Sensor patients can use RF feature to beam readings directly to the Revel™, but they will be asked if they want to use BG reading for calibration
Neat. However, it's not a big deal to have it finally work the way it always should have. Seems like a software/firmware upgrade that should have been done a long time ago.

· CareLink Professional and Personal have been updated and will be available later in March
- Guardian REAL-Time will be on the new version of CL Pro
First, it's been my experience that CareLink sucks. Second, I am personally insulted that there's a version of CareLink that provides additional features for health care professionals, but it's not for lowly diabetic patients.

Once again, I remind everyone that these are just my opinions. I haven't used a Revel or the latest Medtronic CGM sensors.
You may need features I don't care about. You may like things I dislike.
I'm just sharing my thoughts on the decision I'm making.

This year’s topic is: 6 things you want people to know about diabetes.
Here are the first six things that came to mind for me:

1. Diabetes is not one disease. Some times people like to say there are two types, "type 1" and "type 2," but those names are inadequate and don't fit a lot of people with diabetes. Doctors fell back to numbered types because they kept picking bad names for the diseases, as in "juvenile onset diabetes" for a disease that could strike at any age, "insulin-dependent diabetes" when dependence on insulin could come about in many totally different ways.
Type 1 and type 2 are still lousy names and there aren't enough of them. There are many different causes and symptoms of different people with both "type 1" and "type 2" diabetes.
The generic nature of these names, type 1 and type 2, expresses a continuing lack of understanding of the diseases.
It's hard to blame the public for not knowing the difference between type 1 and type 2. They sound the same.
Names like insulin-resistant diabetes or autoimmune diabetes, monogenic diabetes, MODY, LADA, would all be good for the public to learn.

2. I would like people to know that the idea that unnecessary medical tests are a huge financial burden on our health care system is a myth. Medical tests are how doctors figure out what you've got.
Did you see the short list of kinds of diabetes above? Do you know that there are more? Do you know that not only does most of the public treat them all the same, but so do many in the medical community?
Do you know that many people who think they have autoimmune diabetes may in fact have monogenic diabetes? Those with autoimmune diabetes require injected insulin, but some with monogenic diabetes could be treated with oral medications, if their doctors knew.
Diagnosis makes a difference.
There is a part of our health care system that takes 30% off the top and provides no health benefit. It is not medical testing. It's the insurance industry.

3. I would like people to know that diabetics suffer disproportionately in the broken health care system of the U.S.
I'm grateful that we have finally done something about affordable health care after all these decades of people struggling, suffering, and dying because of the system we have had in place. I wish more had been possible, but not much can be done politically when billions of dollars are at stake.

4. I would like people to know that my insulin pump does not take care of my diabetes for me. Being diabetic requires a lot of attention, 24/7.

5. I would like people to know that insulin is not a cure, and we really want a cure.

6. I would like people to know that while it's no fun to be diabetic, it's something we can deal with because we have to. It has to be dealt with, but it doesn't have to limit us.

Monday, November 8, 2010

For years they prayed for the day,
the day they could stop
bleeding him for blood sugars.
staring at his food,
counting the carbohydrates,
insulin on board...

They wished they could forget it all,
all of the knowledge and lore,
the glycemic index,
site sensitivity,
medical adhesives,
long-term complications...

... as if it weren't all complicated.

They wanted to stop worrying
about the impact of joyful play
on blood sugar balance.

So they wished for the day,
the day they could get rid of it all...
boxes of test strips,
the sharp things, needles, lancets, syringes,
the technological marvels...
meters, pumps, sensors,
the tools of replacing beta cells
and mimicking
the way the body is supposed to work,
the insulin
would all finally be stacked up in a big pile,
packed up to be sent away.

They wished and prayed the day would come,
But diabetes left in the night,
And with it took their son.

When I first posted this on Tu Diabetes in the Poetry Club, I apologized and wrote, "Why did I write this? I don't know. Maybe I shouldn't have. But here it is."
I'm sorry to be so negative sometimes. I hope that this blog is positive often enough to make up for it. It's sad that when I try to be profound, I'm often profoundly depressing instead of profoundly uplifting or inspiring.
The whole picture is bound to have some dark as well as light, though, when you're trying to show what it's like to live with type 1 diabetes.
So what made me write this?
I've certainly heard of a lot of diabetic children dying, and it's hard not to try to imagine how that must be for parents. And I heard a little bit of what it's like. And right after that, I read about someone else imagining what it would be like to finally have a cure.
The two ideas swam around in my head for a while, then collided. And the above poem is the wreck.

Friday, November 5, 2010

Once again I'm blogging well after the event I'm blogging about. If you've been reading this blog, you've probably come to expect that.
If this is your first time here, you probably haven't been waiting for this, so it's all right with you, too.

On October 16th I rode my bicycle across Death Valley with about 350 others, all of us having made the commitment to work toward a cure for type 1 diabetes. In addition to the riders there were dozens of volunteers working at the aid stations, in the SAG (Support And Gear) vehicles, and at the start/finish. Behind every rider there were the many people who made donations that are the real, rather than simply symbolic, investment in a cure.

I want to thank everyone who contributed to my efforts to raise $3000 to cure type 1 diabetes.

However, I'm writing about the symbolic journey across the Valley of Death.
My blood sugar was 152 before breakfast at 5:30, and I didn't bolus as much as I would have if I wasn't about to go for a long ride. Knowing my blood sugar was a little high I didn't check again before the start.
I started riding with friends I had made in the Western Wisconsin Chapter of the JDRF. I was the only rider from the Desert Southwest Chapter. (something we should fix)

Riders lined up behind me

Riders lined up ahead of me

Since I had, in my registration for the ride, said that I was riding to honor the memory of Jesse Alswager, and I wanted to share a room, I bunked with Jeff Steuer, a Western Wisconsin rider who who has a 17 year old daughter with type 1 diabetes.

Jeff and me

Jeanne, one of the fantastic coaches

So when I started out, I was riding with Jeff, his sister, Nancy and brother-in-law Keith, and other cheeseheads. I was glad to be welcomed to their group, but I couldn't stay with them.
I almost never do group rides, so I'm not used to sticking to a pace line. When I was in a line, I would either be working harder than I wanted to keep up, or feeling like I was blocked by the rider in front of me and had to coast or even brake. They would go up the hills faster than I was comfortable with, then coast down the other side. Except for Jubilee Pass at the turnaround point, the road was all rolling hills, or at least seemed that way to me.
We had been told that the best plan for success was to get as far as we could while the valley was in shade, before the sun came up over the eastern mountains. We had to do that without, of course, going so hard we ended up worn out before we got to the big climb at Jubilee Pass.
I couldn't see the benefit in coasting downhill, especially in the early going. So I would go to the back of our little pack on the uphills, then keep pedaling and pass everyone on the downhills. Finally, the ups outweighed the downs, and I fell behind and couldn't catch up. But I was going my own, inconsistent pace, riding alone the way I am used to.
I caught up again at Badwater, the first rest stop and the turnaround point for those doing the 32 mile option, but they were well on their way by the time I checked my blood sugar, (126) ate some food, took a couple of pictures, waited in line, and used the restroom.

Badwater. I'll be back.

This stop verified that so far, my hydration and food plan was working well. I hit the road.
That first 16 miles had taken about an hour.

A couple of Western Wisconsin riders in Godspeed Jesse jerseys.

At the pre-ride dinner the night before, it had been announced that we would have a special feature added during this ride, which may become part of all JDRF rides from now on. One mile of the ride would be declared a "mile of silence" to honor those we have lost to diabetes. It could have been any mile, but it was declared mile 23. February 3rd, 2/3, was the day that Jesse Alswager died.
I rode in silence most of the day, but out there between Badwater and the second rest stop, Mormon Point, I rode a mile in silence to honor Jesse, and all others who have died fighting type 1 diabetes.
This stretch was more of the same rolling hills, or actually gaining and losing elevation as the road followed the curves of the mountains on the eastern edge of Death Valley.
We were mostly in the shade of the valley until about 8:30, when the sun came out and the temperature began to climb.
At Mormon Point, 31 miles, my blood sugar was 135, so I was pretty happy with how I was doing. I ate some more from the well-stocked tables, another half banana, another quarter pbj, refilled my three water bottles, and was off again.

The rolling continued for a while, then there was a long, rather steep hill before I reached the next stop, Ashford Mills, at 46 miles. Although the distance between Mormon Point and Ashford Mills was shorter than the distances between the previous two rest stops, with the climb in the heat, it was much harder, and of course, the next segment of the ride, from there to Jubilee Pass was supposed to be 6 miles that would take at least an hour.
My blood sugar at Ashford Mills was 104. There was not a lot of room there. I would have liked it to be higher. I didn't want to panic, though. It wasn't as if I had a real low blood sugar, and it wasn't as if I was really dropping rapidly. It was about 10:15, so I had dropped about 30 points in an hour.
I tried to eat more than I had at the previous stop before setting out on the six mile climb up to Jubilee Pass, about 1300 feet of elevation increase.
It had gotten seriously hot, and I say that as someone who has lived for almost a decade in the Phoenix area. People with thermometers on their bikes were seeing temperatures like 113. Someone said 118.
So I cranked away as best I could, climbing and climbing, trying to keep drinking the warm water I had in my bottles, water that had been ice cold minutes before, feeling more and more exhausted, but knowing I was getting closer to the top.
When I got to the Jubilee Pass aid station, I discovered it is actually a few yards away from the actual summit. For about two seconds I considered riding up to the summit before coming back to stop at the aid station... then I wised up and stopped. I got into the scant shade as quickly as I could, and checked my blood sugar again.
86. Hmm, a little sugar would have made that climb easier.
Bob Panisch, one of the coaches and a CDE came over and asked me how I was doing and what my blood sugar was. I told him and let him know what was going on. He made some good suggestions, but I told him I was going to do this my way.
I could see that he had good reason to be concerned about me. My bike shorts and my jersey were crusty with salt. Many riders were dropping out. I had a borderline low blood sugar.
But I assured him that I had done a lot of hard things before, and I wouldn't be stupid.

More Godspeed Jesse jerseys, with 2/3 on the sleeve.

I pigged out, refilled everything, and rode to the summit for a picture.

The kind of picture you take when you won't stand in line.

Then I started back. On the way down, one of the coaches asked how I was doing, and I said that I was glad the hard part was over.
He said, "That was tough, but the hard part is getting all the way back."
And he was right. After one large, wonderful cloud blocked the sun for maybe half an hour, the heat did not let up. I felt at times like I could feel waves of heat coming off the pavement. It was like being roasted.
Back at Ashford Mills, my blood sugar was back at 140.
When I reached Mormon Point, it was 144. All was well in that regard.
Then at Badwater it was 198. I was probably getting dehydrated. Looking back, my pace had greatly decreased in that section of the ride. But my reaction was to just not fuel up so much. I probably could have cooled off in the shade a little longer and drank more before going on.
Anyway, an additional rest stop had been set up for us, because of the conditions, about 10 miles from the finish. When I got there, about an hour after I had stopped in Badwater, my blood sugar was still 188.
Figuring that I "only" had ten miles to go, and I would be done soon, I thought it would be a good idea to give myself a small correction bolus, less than I would give if I wasn't riding.
And I didn't eat anything.
Well, those miles dragged on. It was hot. The hills were steep. My body was sore all over. Sure my muscles were sore from working, but my back was sore from being hunched over, my neck was sore from looking up from my hunched over position, my butt and my crotch were sore from hours in the saddle, my feet were sore from pushing down on them all day.
And I was feeling like my blood sugar was low.
So with less than a mile to go, with one last, short, 100 yard climb left before a long downhill into Furnace Creek Ranch, I just stopped. I considered testing my blood sugar, but instead just pulled out a Clif bar and started trying to eat it. That was a poor choice. I only ate the bar because I had been carrying it all day. Before that, I ate gels while I was riding, and replaced them with new ones from the rest stops. I felt silly about everything that I carried the whole way without using it, like my cell phone.
It turns out a Clif bar is really hard to chew and swallow when you're dehydrated.
So I was probably standing by the side of the road for a long time before I started up again. About eight other riders passed me, and of course all asked if I was OK.
I cranked up that last hill, turned the corner, and rolled the remaining half mile in.
At the medical tent (Everyone checks in at the medical tent after finishing. It's a rule at this ride.) my blood sugar was 98. It certainly must have been lower before I stopped to eat the Clif bar.
So it wasn't perfect blood sugar management for the day, two minor lows, enough to affect my energy level, but it was a magnificent experience.

105 miles ridden. 9 and a half hours. 1 mile of silence. $3000. A shot at ending type 1 diabetes.